Boy, have I been neglecting this blog. I don't know if anyone is following me, but if you are, I'm sorry for the delay.
As my last post said, I had been feeling really good for several weeks. I even made that awesome comparison chart, which felt really wonderful to do. Seeing it all laid out like that was an awesome way to mark my progress. I continued feeling that well through Thanksgiving and into December. I told everyone who was interested that I thought I was about 80% better.
Then in the second week of December, I had a set back. At first I thought it was the result of an unfortunate cooking spray incident. I woke up one morning just convinced I had killed my worms. (Nitrous oxide - the propellant in kitchen spray and canned whipped cream is one of the only things that can kill hookworms.) Over a couple of days, many of my symptoms were making a reappearance, including fever and night sweats. I sent this message to a person I trust who is very knowledgeable about most aspects of helminth therapy:
"I think it was the cooking spray at my friend's house. I was visiting her, and talking to her kids. She had no idea about the potential problem, of course. So, she's cooking away, I'm turned around talking to her kids, and I heard a weird sound. I turn around, and she's spraying the cooking spray. I turned back around right away, but I could smell it. I didn't worry right away, because I was standing a little ways away from her. But over the last week, my symptoms are returning. But it might not be that. I mean, I know that two members of my household very clearly have cold symptoms, so maybe I've got a virus trying to get a hold of me. I also know that it's almost time for my period, and historically, my symptoms always get a little worse right before. Also, the weather here has been all over the place - really warm (for the season) for a day or so, then really (really!) cold, then ice storm, then warm again. The weather is also a trigger for worsening symptoms for me. As I say - I'm just not sure what's happening over here."
I spent that day really panicking. It would have been almost impossible to get another dose of worms at that point, and I was really dreading starting over from nothing. When I received a reply, I was so relieved! Here's what they said:
"Given what people have said about needing to inhale nitrous oxide spray directly from a can in order to kill HW, and the situation you've explained, I think there's a very good chance that the nitrous didn't actually reach your worms and that something else is causing the flare of symptoms.
I often find it frustrating knowing what's causing particular symptoms that surface from time to time, and I frequently jump to the wrong conclusion!
I've just checked back through our earlier conversations, and see that you'e only had worms for around 8 months. This means that periodic exacerbations are still possible for you. In fact you could get these up to 2 years after your initial inoculation. They usually stop between 18 and 24 months, but, until then, flares like you're having now are quite possible, so it may be this rather than the flu, period, nitrous oxide, or whatever.
So I'd sit tight and see what happens. Hopefully, everything will fit right back into place."
See, calm and reassuring. I knew what he was saying made a lot of sense, and stopped worrying that my worms were dead. But that didn't improve my physical health.
My malar rash is still the worst it's ever been. In November, my dermatologist thought it might be demodex (a mite that lives in the follicles of the face - it can be a trouble maker when it becomes overpopulated). He prescribed an oral anti-parasitic (no thank you!) and a topical cream. I did a bunch of research though and decided to use a tea tree oil/vitamin E oil regimen instead. I was doubtful that it was demodex anyway, since we've already tried treating for that about a thousand time. But I gave it the old college try. Nothing. Nada. When I went back to my dermatologist this week, I asked for a biopsy. I'm still waiting for the results. We'll see if anything turns up.
The pain in my right elbow still comes and goes. I think that the steroid shot from July has worn off. Before I got it, I had pain both on the outside and inside of the elbow. After the shot, I only had pain on the inside. Now, the pain is back on both sides. Sometimes it's barely noticeable. Sometimes it's enough to take my breath away.
I've had a few fevers in the last few weeks. And a few nights of night sweats. That combination always wipes me out the next day, so I've been slower and had less energy too.
I had thought my cold urticaria to be completely resolved, too. Alas, this attack of polar air over Wisconsin has proven me wrong. I've had very few episodes of actual hives, but I've been getting itchy at least once a day and had some real problems with my stomach. The excess histamines in the blood system irritate the GI tract and can lead to all sorts of problems. I didn't know this for years and was trying to treat my stomach issues and my allergies separately. Guess what? It's all connected! (Of course it is - everything is connected!) So now that I know that the stomach issues can be shut down relatively easily with a dose of Benedryl, I'm coping much better than in previous years.
I've had some kidney problems popping up, too. Just a couple of days here and there. Kidney pain (when I pee), as well as blood and protein in my urine. But it seems to pass with some minor home remedies and a lot of rest. And water, obviously.
My hair re-growth seems to have stopped, too. I don't think I'm losing hair again, but not all of my bald spots have filled completely in yet.
Also, I still have random days where I wake with some body part not working correctly. For a few days, I had terrible pain in all of the muscles of my pelvic girdle. Yesterday, my right hand was so swollen and sore that I couldn't fold the laundry. But these things are transient, and pass much more quickly than before.
A few symptoms that I hadn't mentioned initially have also disappeared, and I'm grateful for that. I was having a terrible time with my heart racing and a sensation like I just had too much blood in the top of my chest, neck and head. I don't know what that's called, or if it has a name, but it was very disconcerting. And it's not happening any more.
All of this is a marked improvement over last winter (even with some recurring symptoms), so I'm pleased with my progress. I just haven't come quite as far as I thought. Or maybe I did, and now I'm going back again. I believe that this is the right treatment plan for me, and am trying to stay patient as I get through this mini-flare and through the coldest part of the winter. I've been losing weight, but I'm not getting any new clothes for a while. I keep thinking that this is the last terrible winter for me (health wise - I'm not looking to control the weather) and I'll come out in the spring like a beautiful butterfly!
As my last post said, I had been feeling really good for several weeks. I even made that awesome comparison chart, which felt really wonderful to do. Seeing it all laid out like that was an awesome way to mark my progress. I continued feeling that well through Thanksgiving and into December. I told everyone who was interested that I thought I was about 80% better.
Then in the second week of December, I had a set back. At first I thought it was the result of an unfortunate cooking spray incident. I woke up one morning just convinced I had killed my worms. (Nitrous oxide - the propellant in kitchen spray and canned whipped cream is one of the only things that can kill hookworms.) Over a couple of days, many of my symptoms were making a reappearance, including fever and night sweats. I sent this message to a person I trust who is very knowledgeable about most aspects of helminth therapy:
"I think it was the cooking spray at my friend's house. I was visiting her, and talking to her kids. She had no idea about the potential problem, of course. So, she's cooking away, I'm turned around talking to her kids, and I heard a weird sound. I turn around, and she's spraying the cooking spray. I turned back around right away, but I could smell it. I didn't worry right away, because I was standing a little ways away from her. But over the last week, my symptoms are returning. But it might not be that. I mean, I know that two members of my household very clearly have cold symptoms, so maybe I've got a virus trying to get a hold of me. I also know that it's almost time for my period, and historically, my symptoms always get a little worse right before. Also, the weather here has been all over the place - really warm (for the season) for a day or so, then really (really!) cold, then ice storm, then warm again. The weather is also a trigger for worsening symptoms for me. As I say - I'm just not sure what's happening over here."
I spent that day really panicking. It would have been almost impossible to get another dose of worms at that point, and I was really dreading starting over from nothing. When I received a reply, I was so relieved! Here's what they said:
"Given what people have said about needing to inhale nitrous oxide spray directly from a can in order to kill HW, and the situation you've explained, I think there's a very good chance that the nitrous didn't actually reach your worms and that something else is causing the flare of symptoms.
I often find it frustrating knowing what's causing particular symptoms that surface from time to time, and I frequently jump to the wrong conclusion!
I've just checked back through our earlier conversations, and see that you'e only had worms for around 8 months. This means that periodic exacerbations are still possible for you. In fact you could get these up to 2 years after your initial inoculation. They usually stop between 18 and 24 months, but, until then, flares like you're having now are quite possible, so it may be this rather than the flu, period, nitrous oxide, or whatever.
So I'd sit tight and see what happens. Hopefully, everything will fit right back into place."
See, calm and reassuring. I knew what he was saying made a lot of sense, and stopped worrying that my worms were dead. But that didn't improve my physical health.
My malar rash is still the worst it's ever been. In November, my dermatologist thought it might be demodex (a mite that lives in the follicles of the face - it can be a trouble maker when it becomes overpopulated). He prescribed an oral anti-parasitic (no thank you!) and a topical cream. I did a bunch of research though and decided to use a tea tree oil/vitamin E oil regimen instead. I was doubtful that it was demodex anyway, since we've already tried treating for that about a thousand time. But I gave it the old college try. Nothing. Nada. When I went back to my dermatologist this week, I asked for a biopsy. I'm still waiting for the results. We'll see if anything turns up.
The pain in my right elbow still comes and goes. I think that the steroid shot from July has worn off. Before I got it, I had pain both on the outside and inside of the elbow. After the shot, I only had pain on the inside. Now, the pain is back on both sides. Sometimes it's barely noticeable. Sometimes it's enough to take my breath away.
I've had a few fevers in the last few weeks. And a few nights of night sweats. That combination always wipes me out the next day, so I've been slower and had less energy too.
I had thought my cold urticaria to be completely resolved, too. Alas, this attack of polar air over Wisconsin has proven me wrong. I've had very few episodes of actual hives, but I've been getting itchy at least once a day and had some real problems with my stomach. The excess histamines in the blood system irritate the GI tract and can lead to all sorts of problems. I didn't know this for years and was trying to treat my stomach issues and my allergies separately. Guess what? It's all connected! (Of course it is - everything is connected!) So now that I know that the stomach issues can be shut down relatively easily with a dose of Benedryl, I'm coping much better than in previous years.
I've had some kidney problems popping up, too. Just a couple of days here and there. Kidney pain (when I pee), as well as blood and protein in my urine. But it seems to pass with some minor home remedies and a lot of rest. And water, obviously.
My hair re-growth seems to have stopped, too. I don't think I'm losing hair again, but not all of my bald spots have filled completely in yet.
Also, I still have random days where I wake with some body part not working correctly. For a few days, I had terrible pain in all of the muscles of my pelvic girdle. Yesterday, my right hand was so swollen and sore that I couldn't fold the laundry. But these things are transient, and pass much more quickly than before.
A few symptoms that I hadn't mentioned initially have also disappeared, and I'm grateful for that. I was having a terrible time with my heart racing and a sensation like I just had too much blood in the top of my chest, neck and head. I don't know what that's called, or if it has a name, but it was very disconcerting. And it's not happening any more.
All of this is a marked improvement over last winter (even with some recurring symptoms), so I'm pleased with my progress. I just haven't come quite as far as I thought. Or maybe I did, and now I'm going back again. I believe that this is the right treatment plan for me, and am trying to stay patient as I get through this mini-flare and through the coldest part of the winter. I've been losing weight, but I'm not getting any new clothes for a while. I keep thinking that this is the last terrible winter for me (health wise - I'm not looking to control the weather) and I'll come out in the spring like a beautiful butterfly!